Monday started out great as Clara ate almost half a waffle while we waited to have her weekly labs drawn. After over half an hour the nurse came to get us for ...surprise!... Admission to the Day Hospital for IVIG. They didn't tell me this appointment was for IVIG. Completely unprepared for. 5+ hour day at the hospital, I called Alan to have him bring more food for Clara, toys, her meds for the morning and afternoon, and most urgently - a cup of coffee. I hate IVIG days.
Clara had an allergic reaction to IVIG the first time she got it so they premedicate her with benadryl before the infusion which makes her a real grumpy fussy face. That threw off any anticipated gains in her eating. In fact, she didn't eat anything until that night when Alan brought home pizza and, for Clara, a chocolate shake. She refused it at first and then drank more than either Alan or I had.
Alan and I are revising her nutrition plan again after seeing her weight. She dropped from 7.9kg last Wednesday (her highest ever has been 8.05kg) to 7.55kg on Monday. That is 4.5% weight loss. None of us were happy to see that number, but it was also expected that she would have dropped. She has plateaued at that 7.9kg for a couple of months now and the only thing we could expect was for her to drop her weight since I quit feeding her and she is just not eating enough on her own yet. Fortunately, her kidney numbers and electrolytes look great. I'll talk more about the latest plan in my next post.
We did find out as we were leaving the hospital that Clara's white blood count is low again. Just like 3.5 weeks ago when she got IVIG. I'm not sure what is causing this and am trying to not be overly concerned. I hope she is just fighting a little something and slowly depleting her white count over the course of a month. We are expecting a call from the nurse practitioner today regarding taking labs less frequently (every 1.5 weeks instead of every week) because her numbers have been very steady for so long and we aren't having to make changes in her medications anymore. The plan for removing her Hickman central IV line has changed a bit - we are now waiting to find out about the health of her 6 month marrow from last week. Once you have both a good looking 6 month marrow and don't need to draw labs more than about 1.5 weeks, they are more confident that you will no longer need further therapy and will discuss scheduling taking the line out. This was great to hear yesterday, but considering the fact that she seems to be dependent on the IVIG every 4 weeks, I assume that will delay line removal. We will see when I talk to the NP later today.
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